Grief and Dementia – A Complex Process

Grief is always difficult. It’s a heart-wrenching process that often isn’t predictable. In fact, grief looks different from one person to another. 

The complexity of grief becomes even more significant once you add caregiving into the mix. Caregivers often begin to grieve while their family member is still alive – a process that is even more significant when considering grief and dementia. 

Grief and Dementia

A key aspect of dementia is progressive loss of self. Over time, dementia patients lose more of their cognitive ability, to the point where they are unable to recognize family members or understand the world around them. 

Caregivers often find that they grieve at unexpected moments. A common example is when a significant loss of ability occurs, such as the first time a family member no longer remembers the caregiver’s name. 

In some cases, this may trigger something known as a grief surge. Such surges can involve intense emotions and pain, which makes them seem frightening. However, this is simply a part of grief and adjusting. 

One good approach is simply to allow the emotion to be and spend some time with it. There are legitimate things to grieve when caring for a loved one with dementia. Take time to acknowledge the emotion and seek help if you need to. 

Trying to suppress the grief tends to be impractical and may prevent you from adjusting as you need to. 

It’s also important to realize that others may not understand. People often assume that grief only occurs when someone dies. This can make them resistant to what you are feeling. Even so, grief and dementia do often go hand-in-hand. 

Other approaches for working through the grief include the following:

•  Expect to experience grief more than once. The emotions often occur multiple times, especially after significant changes. 
• Talk to people you trust. While some may not understand of what you are feeling, look for friends or family members who can support you and simply listen. 
• Relieve tension. Grief often leads to built up emotions and tension that needs to be relieved. Approaches like punching a pillow and crying can be powerful tools (as long as you avoid doing these near the person with dementia). Getting involved in fun and physical experiences can also help.
• Spend time with others. There is a strong loneliness component to grief. Spending time with others can help. If you don’t have a large social circle, you could look for social clubs or events that will allow you to interact with others. 
• Talk to your doctor. Your doctor will often be able to help and give you advice about how to respond. This can be important even if the emotions don’t feel overwhelming, as grief can sometimes progress into depression.

Grief After Caregiving

The connection between grief and dementia doesn’t just occur while the family member is alive. Impacts occur after they have passed away as well. 

This can sometimes mean that the caregiver feels less grief after death (or none at all) because they have already been grieving for so long. Alternatively, the grief may be more pronounced or it may follow a completely different pattern.

 It’s important to understand that this is completely fine. 

Grief is always an individual process. No two people grief in exactly the same way, nor should they. After all, each person had their own unique relationship with the person who has passed away. 

There is no right answer. The best approach is often to just pay attention to what you need and simply be kind to yourself.

Looking for support is another important aspect. Some people find that they struggle to rebuild their life after caregiving and may suffer from depression. The Family Caregiving Alliance provides plenty of important information, plus a list of resources.